Avery’s heart transplant

The 18-hour surgery to transplant Dalton’s heart into Avery’s chest was a success.

Dalton Lawyer

It changed Avery’s life.

Avery had been in and out of Boston Children’s since birth when she was diagnosed with hypoplastic left heart syndrome (HLHS), a very serious congenital heart defect in which the left side of the heart is underdeveloped and can’t pump enough red blood to supply the body.

“Avery is our only child. Even though we normalized life in her early years, it was so hard,” says her mother Cheryl Toole, nursing director of the Boston Children’s Neonatal Intensive Care Unit.

Avery had eight open-heart surgeries. Her skin was tinged blue because her oxygen levels were chronically low. Normal childhood activities like going to a birthday party were exhausting.

At age 4, her heart was failing. She was being kept alive by a Berlin Heart, an external device to mechanically pump her blood.

“Her heart transplant turned her life around in ways we expected and in ways we never anticipated,” says Cheryl.

Avery: After her heart transplant

No longer a chronic patient, Avery is an active 12-year-old who plays lacrosse, soccer and basketball. These are the clinical outcomes everyone hoped for. “Looking at Avery today, you’d never know what she’s been through,” says Cheryl.

Avery’s heart transplant also brought some unimagined changes into the Toole’s lives. After her transplant, they sent a letter to the organ bank to thank the donor’s family. It made its way to the Lawyers. The families agreed to meet and bonded in a way none of them expected. They have become family, vacationing together every year and sharing and creating memories.

Avery has an incredible heart and is in great health. Dalton’s brothers have become her brothers. The Lawyers find some comfort, knowing their son’s heart beats strong in Avery’s chest. “Because of Dalton, Avery has a chance,” says Jim.

On August 31, Avery started middle school. “It’s another milestone Mike and I never thought we would have the fortune to celebrate,” says Cheryl.

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Research and innovation: Making pediatric heart transplants possible

Clinical care and hope

Amazing work happens at Boston Children’s, says Cheryl. “The hospital symbolizes hope for so many families. They come here when other hospitals have told them there is no hope,” says Cheryl.

Many come to Boston Children’s with a child whose health is in danger. Doctors and nurses caring for the child have a responsibility to inform families of risks and side effects.

“In the face of that responsibility, we sometimes forget that we need to enable them to have hope,” says Cheryl.

Cheryl doesn’t forget.

She keeps a laminated photo of Dalton behind her hospital identification badge. He’s there, every day, to remind her of the power of hope and how important it is to offer hope to other families.

Though Dalton’s blood and tissue types were perfect matches for Avery, she had antibodies that made her heart transplant especially challenging. Avery had had so many transfusions during her young life, her immune system had developed antibodies to fight off what it perceived as risks – from donated blood or a donated organ.

An adult who had developed a similar level of antibodies would have been removed from the transplant list because the risk of rejection would be too high.

Specialists in the Boston Children’s Heart Transplant Program, in collaboration with other leaders in pediatric heart transplant, had developed specialized pediatric protocols, including high-dose steroids and other medications, to help clear those antibodies and reduce the risk of rejection.

After Avery’s transplant she underwent a number additional procedures to keep the amount of circulating antibodies at a safe level and minimize the risk of rejection. The heart transplant and extended treatment succeeded, making it possible for Avery’s young body to accept and thrive with Dalton’s heart.